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My Psychologist Suggested I Have Gluten Intolerance


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#1 Astrid1986

 
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Posted 11 May 2012 - 01:20 PM

Hi,
I am new to these forums, although I've been reading for a while. I seem to frequent every forum for every gastrointestinal disease except for stuff like cancer, because I am undiagnosed. I am due to see a gastroenterologist on the 21st. When discussing my symptoms, my psychologist (yes, I know this is weird given s he's not a medical doctor) suggested I might have gluten intolerance (she didn't mention Celiac but I know that is the consequence of gluten intolerance). Here are my symptoms:
- Constipation, diarrhea, bowel cramps.
- Stomach pain and reflux.
- Fatigue.
- Pain all over the body, hard to say if it's bones, joints or nerve pain.
- Feeling of overload.
- Psychiatric symptoms that are likely just psychiatric, eg. dissociation (I carry a diagnosis of dissociative identity disorder), but that have gotten worse over the past year.
- Irritability.
- Balance problems.
- Headaches.
I know not all of these signal Celiac disease, eg. the headaches and balance stuff, but I mention them because they've gotten worse or started along wiht the gastro symptoms. I was diagnosed with a vitamin B12 deficiency (which can explain these neuro symptoms) recently, but have been deficient in B12 for at least half a year (my former GP did not believe I was deficient enough). I heard somewhere Celiac can cause B12 deficiency, but so can other bowel disorders (eg. Crohn's).

What should I ask/tell the gastro doc when I see him? The nurses (I'm institutionalized for psych reasons) said I should only take my medication list and insurance card, but I would think I should take this list of symptoms too (I have it saved on my computer). Should I ask specifically about Celiac? My GP put something very strange int he referral letter; she thinks my shunt (for hydrocephalus) that runs from my brain to my abdomen, is causing trouble, which I've never heard of. My psychologist did tell the nurses that she thinks I might have gluten intolerance, so maybe they'll suggest I ask the gastro about that (a nurse will likely come with me to the doctor anyway). Any suggestions or advice are greatly appreciated.
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#2 ravenwoodglass

 
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Posted 11 May 2012 - 01:28 PM

Welcome to the board. Wow you sure do have a good shrink! I had to educate mine. Celiac is much more than just a gut disorder. (I use celiac and gluten intolerance interchangably because IMHO they are the same thing) Celiac can cause the psychological issues you are dealing with, not always the case of course but many times we see great relief from those issues once gluten free. Do not go gluten free yet as you need to be eating gluten for testing to be accurate. False negatives even on gluten are not uncommon. Make sure the GI doctor runs a full celiac panel and make sure you stay on gluten until the endo is done if you are having one.
I hope you are feeling much better soon.
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"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 pricklypear1971

 
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Posted 11 May 2012 - 01:31 PM

This link should be handy.

Print out as many fact sheets as you need.

http://www.curecelia...ide/fact-sheets
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Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#4 Astrid1986

 
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Posted 11 May 2012 - 01:36 PM

Thanks for the welcome and advice. I know a lto of my psych issues could be caused by celiac. My psychologist has a relative with my primary psych diagnosis (autism spectrum disorder, the DID was diagnosed later) and this person improved dramatically once gluten free. I know that the evidence is inconclusive whether celiac is more common in autistics (it's an alternative medicine hype that a gluten-free/casein-free diet cures autism, but that was definitely disproven). I will definitely ask to be tested f or celiac. What is an endo by the way? Endoscopy?
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#5 Astrid1986

 
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Posted 11 May 2012 - 01:54 PM

Thanks for the link. I'll look at it tomorrow. Off to bed now.
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#6 Cara in Boston

 
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Posted 11 May 2012 - 03:51 PM

headaches and balance issues are also common symptoms of celiac and/or gluten intolerance. Looks like you have more than enough symptoms to justify getting the full panel of blood tests and possibly an endoscopy. Even if the tests are negative, the final test is giving the diet a try.

Best of luck to you.

Cara
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#7 Di2011

 
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Posted 11 May 2012 - 04:57 PM

I just had a quick read about DID and for our other members you might be interested (experienced) with some of these. We use the term 'brainfog' to describe many of these similar things. I've bolded the ones that I can related to.
Current memory loss of everyday events
Depersonalization
Depression
Derealization
Disruption of identity characterized by two or more distinct personality states
Distortion or loss of subjective time
Flashbacks of abuse/trauma
Frequent panic/anxiety attacks
Identity confusion
Mood swings[18]
Multiple mannerisms, attitudes and beliefs
Paranoia[20]
Pseudoseizures or other conversion symptoms
Psychotic-like symptoms such as hearing voices and other Schneiderian first-rank symptoms
* I was in early stages of this when I went gluten free - tied right in with a marked increase in panic attacks.
Self-alteration (feeling as if one's body belongs to someone else)
Somatic symptoms that vary across identities
Sudden anger without a justified cause
Spontaneous trance states
Suicidal and para-suicidal behaviors (such as self injury)
Unexplainable phobias *Driving, snakes/spiders/mice - don't think I'll ever lose these

Many of these symptoms seem a lot similar to what I describe as the brainfog and 'zoning out' that I use to do. But at the same time I got so sick of feeling like all I did was think about myself!@! Listening skills go out the window.
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#8 GFinDC

 
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Posted 12 May 2012 - 06:53 AM

...
- Balance problems.
- Headaches.
I know not all of these signal Celiac disease, eg. the headaches and balance stuff,...


Actually, balance issues and headaches are celiac symptoms. There is a condition called gluten ataxia where the ability to coordinate muscles is affected, causing difficulty walking, balancing etc. Migraines are reported by users on the forum too.

There are also withdrawal symptoms that some people get when first quitting gluten. Supposedly the gluten proteins are similar enough to opiate proteins (I think they are actually properly called peptides) to trigger opiate receptors in the brain. Then the theory is you can have withdrawal symptoms from stopping gluten due to those receptors not getting their "fix" anymore..

People on the forum have reported depression, anger, mood swings, brain fog, insomnia, nueropathy (nerve pain), muscle twitches, etc from gluten.

There seems to be a wide range of affects gluten can have on the brain and nerve system.

Some nerve symptoms can be caused by vitamin deficiencies also. Vitamin / mineral deficiencies can happen in celiac due to malabsorption from intestinal damage. A vitamin / mineral panel would be a good idea. And a celiac blood antibody panel.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#9 Skylark

 
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Posted 12 May 2012 - 08:18 AM

Thanks for the welcome and advice. I know a lto of my psych issues could be caused by celiac. My psychologist has a relative with my primary psych diagnosis (autism spectrum disorder, the DID was diagnosed later) and this person improved dramatically once gluten free. I know that the evidence is inconclusive whether celiac is more common in autistics (it's an alternative medicine hype that a gluten-free/casein-free diet cures autism, but that was definitely disproven). I will definitely ask to be tested f or celiac. What is an endo by the way? Endoscopy?

I had bipolar illness caused by celiac. There are also studies on gluten-triggered schzophenia. The schizophrenics were not celiac, only gluten intolerant. Do NOT let anyone tell you that serious mental illnesses cannot be caused by gluten.
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#10 Astrid1986

 
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Posted 12 May 2012 - 11:49 AM

Many of these symptoms seem a lot similar to what I describe as the brainfog and 'zoning out' that I use to do. But at the same time I got so sick of feeling like all I did was think about myself!@! Listening skills go out the window.


Thanks. My main symptom is the full identity alteration thing though, which is not "brain fog". I did list dissociaitve symptoms on my list of symptoms for the GP because they did get worse over time.
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#11 Astrid1986

 
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Posted 12 May 2012 - 11:57 AM

Actually, balance issues and headaches are celiac symptoms. There is a condition called gluten ataxia where the ability to coordinate muscles is affected, causing difficulty walking, balancing etc. Migraines are reported by users on the forum too.


Oh wow, didn't know this. I know that ataxia is a common s ymptom of more severe B12 deficiency, but not that it could be due to gluten itself in celiacs.

There are also withdrawal symptoms that some people get when first quitting gluten. Supposedly the gluten proteins are similar enough to opiate proteins (I think they are actually properly called peptides) to trigger opiate receptors in the brain. Then the theory is you can have withdrawal symptoms from stopping gluten due to those receptors not getting their "fix" anymore..


Oh okay. I did hear in the alternative medicine community that gluten is "addictive", but I didn't actually believe it due to it being from questionnable (alt med) sources. I unfortunately do not have the medical knowledge to understand the research into this are, if any exists at all.

Some nerve symptoms can be caused by vitamin deficiencies also. Vitamin / mineral deficiencies can happen in celiac due to malabsorption from intestinal damage. A vitamin / mineral panel would be a good idea. And a celiac blood antibody panel.


Yes, I have a diagnosed vitamin B12 deficiency (and iron I think). I will ask to be tested for other minerals/vitamins, but the B12 can't be tested reliably anymore since I'm on injections.
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#12 GFinDC

 
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Posted 12 May 2012 - 04:57 PM

Oh wow, didn't know this. I know that ataxia is a common symptom of more severe B12 deficiency, but not that it could be due to gluten itself in celiacs.

Oh okay. I did hear in the alternative medicine community that gluten is "addictive", but I didn't actually believe it due to it being from questionnable (alt med) sources. I unfortunately do not have the medical knowledge to understand the research into this are, if any exists at all.

Yes, I have a diagnosed vitamin B12 deficiency (and iron I think). I will ask to be tested for other minerals/vitamins, but the B12 can't be tested reliably anymore since I'm on injections.


Hi Astrid,

Here is a short abstract on gluten ataxia, but there is lots of info about it on the web.

Gluten ataxia.
http://www.ncbi.nlm....pubmed/18787912


Abstract
Gluten ataxia is an immune-mediated disease triggered by the ingestion of gluten in genetically susceptible individuals. It should be considered in the differential diagnosis of all patients with idiopathic sporadic ataxia. Early diagnosis and treatment with a gluten free diet can improve ataxia and prevent its progression. Readily available and sensitive markers of gluten ataxia include antigliadin antibodies. IgA deposits against TG2 in the small bowel and at extraintestinal sites are proving to be additional reliable and perhaps more specific markers of the whole spectrum of gluten sensitivity. They may also hold the key to its pathogenesis.

I didn't find the study I was looking for about opiates, but this one talks about effects on learning/memory in mice when given gluten derivatives orally.

Behavioral and pharmacological studies on gluten exorphin A5, a newly isolated bioactive food protein fragment, in mice.
http://www.ncbi.nlm....pubmed/11138726
...
Thus, gluten exorphin A5 has been found to produce various effects not only in the peripheral nervous systems but also in the central nervous system.

You might find this thread interesting:

Non-Specific White Matter On Mri? Anyone Else Have This?http://www.google.co..._PIk95XnPTmxxig
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#13 frieze

 
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Posted 13 May 2012 - 07:47 AM

[quote name='Astrid1986' timestamp='1336852652' post='795059']
Oh wow, didn't know this. I know that ataxia is a common s ymptom of more severe B12 deficiency, but not that it could be due to gluten itself in celiacs.



Oh okay. I did hear in the alternative medicine community that gluten is "addictive", but I didn't actually believe it due to it being from questionnable (alt med) sources. I unfortunately do not have the medical knowledge to understand the research into this are, if any exists at all.


Yes, I have a diagnosed vitamin B12 deficiency (and iron I think). I will ask to be tested for other minerals/vitamins, but the B12 can't be tested reliably anymore since I'm on injections.
[/quote
You can be tested, you need to have the blood draw right before a shot....good luck
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#14 Astrid1986

 
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Posted 13 May 2012 - 12:14 PM

@gfindc: thanks for this info. I am going ot see a neurologist about my balance problems, and I'm going to mention to him that I have GI issues (if I see the neuro before my GI testing is done).

Btw, I didn't know I can be tested fo rB12 when having shots. I get shots weekly, so they should not have worn off by the time I get hte next shot. The Dutch B12 deficiency foundation people I talked to said blood tests make no sense if you'r eon shots, but maybe that's for treatment purposes only (that they have to take your symptoms as a lead rather than the B12 level).
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